Living with epilepsy hasn’t been easy for Grace Garcia, but it hasn’t slowed her down. Now 17, Garcia was diagnosed with epilepsy at 18 months, setting the stage for years of strict diets, changing medications and obstacles to keeping up with her schooling.
But she doesn’t complain.
“Without the ups and downs it wouldn’t be life,” Garcia says. “You have to have some struggles in there to make it to the end of the road.”
With diet, medication and a lot of trial and error, her seizures are mostly under control, occurring only about once every two months.
Garcia has been on the Epilepsy Foundation of Colorado’s Youth Council since her sophomore year, and on March 26, she went to Washington, D.C., for the Teens Speak Up! conference, a three-day visit with Colorado’s congressional representatives to advocate for the more than 55,000 Coloradans like her living with epilepsy.
Marcee Aude, program manager for the Epilepsy Foundation, explained why Garcia was chosen to represent the group.
“Grace has a positive attitude and others are drawn to her kind and optimistic spirit,” Aude said in an email, adding that Garcia has been a leader in her time with the foundation.
Meeting with Rep. Ed Perlmutter of Golden, Rep. Jared Polis of Boulder and aides for Aurora’s Rep. Mike Coffman, Garcia made her case to protect funding for the Centers for Disease Control and the National Institute of Health and more funding for research into cannabis treatment for the condition. She’s never used cannabis herself, but says emerging research is promising and parents of children with epilepsy deserve all of the resources possible to treat their seizures.
It was a lot of work in three days’ time, but she feels she made an impact with the representatives she met with, especially Perlmutter, who has a daughter with epilepsy.
I’m so impressed by young people who share their stories and advocate for their community,” Perlmutter said by email. “Stories like Grace’s are just one of the reasons why I continue to fight for affordable healthcare access and coverage and increased funding for medical research through the NIH and CDC.”
Back from the capital, Garcia is again focusing on her personal priorities.
The Parker resident is finishing her junior year of high school through Colorado Connections Academy, an online public school, and plans to attend Boston University after her 2018 graduation. She hopes to join the CIA after college, traveling the world and keeping her homeland safe.
She loves studying history and writing short, and long, fictional stories, though the short ones are easier to finish.
One story Garcia is writing is a fantasy about a girl living in a town surrounded by a supernatural barrier, one she must break through before she can see the world and return home with a different, wiser perspective.
The parallels to her own challenges with epilepsy and her goals of seeing the world are difficult to overlook, but she insists it’s not in any way autobiographical.
“Everybody has a different story,” she says.
Garcia hopes one chapter in herreal-life story will be about persuading elected officials to provide more resources for the fight against epilepsy.
“I think we have them on our side,” Garcia says. “I think in the future there will be a positive effect.”
